MS Awareness Month
Today marks the first day of MS Awareness Month. I sometimes worry that where I am in my life with MS may come across in a way that makes it seem easy, makes it seem fun or somehow glamorous. Don’t get me wrong my life is wonderful, but everything I do helps me manage, and managing is not easy. Managing is a way to still try to live life to the fullest, but to be quite frank, managing is exhausting. Often times I do not feel free, everything I do comes with a small element of fear and uncertainty. Pushing my body could have much more severe consequences than just regular sore muscles, but not pushing my body might too.
For me it’s been almost a decade of living life with MS. Imagine my shock when I realized that. MS is different from person to person, but it’s also different for the same person. Looking back over the years, some have been much worse than others. Further still, there are months or weeks or days or hours or minutes within those years that have been different.
When I was first diagnosed with MS, it was still somewhat believed that exercise was not recommended. That if you were going to exercise, it should definitely not be vigorous. It makes sense if you think about it, some people MS struggle with heat and most high impact exercise makes you hot. My relationship with exercise was interesting leading up to my diagnosis. I was always active as a kid, signing up for things like cross-country running in grade 5, loving track and soccer and then eventually Mauy Thai kick boxing. But as I got older that relationship turned somewhat dangerous. I became obsessed with it, often doing 1.5 hours of cardio a day, that’s right everyday. The obsession was to be skinny because that’s what “they” tell us we should be. Luckily over the years I managed to snap out of that, but exercise was still something I would do if I felt bad for eating too much rather than just a way to keep myself healthy. Fast forward to 2012, I was diagnosed with a disease with no known cause or cure. All of a sudden a doctor is telling me I should probably not exercise, and if I do, it really should only be very low impact.
What is that saying, you don’t know what you have until it’s gone? Or maybe it’s you always want what you can’t have? Either way, all of sudden I realized what I had been taking for granted, even abusing for so long. I was determined to stay active, and in the beginning I listened, I decided cycling and yoga would be great low-impact exercises, moving away from the running and boxing I had become accustomed to. But in true Patrycia fashion, I somehow found the most intense versions of those low impact ways to exercise. I did spin classes, but they weren’t just your regular spin classes, no the classes I loved the most were ones like cycle performance. I went to yoga, but the classes were strength yoga, core yoga and Ashtanga. Part of me started to wonder what I was so afraid of, I made exercise a priority and I felt amazing. The focus of my exercise wasn’t to be skinny, it wasn’t because I felt guilty for eating too much, it was to get my vision back, it was to get my strength back, it was to be able to do the MS Bike Tour.
After that first Bike Tour I had a follow up MRI, 6 months after my diagnosis and it came back stable. I was excited but a little apprehensive. I knew I was cheating on the low-impact part, so how is it that I was doing ok, better than ok? A few months after that I decided to still pursue my dream of becoming an Edmonton police officer. There just happened to be a new program called Run with Recruiters. I had absolutely no idea what to expect. I was so intimidated, I felt like I had “I have MS” written on my forehead walking in, I felt like I somehow didn’t belong there. But really no one had any idea. The program was for people going through the application process or even thinking of going through the process. Little did I know when I first started that it would actually become a big part of what the Recruiting Unit would look for in people’s application. For some new recruits it even became mandatory as they were waiting for training to begin.
Looking back now, there was definitely a reason I stood out from that very first day, but it wasn’t because I have MS. One of the officers who ran the program told me I stood out because I was strong. I was strong mentally and physically. I never complained and I was always a leader. As the weeks went on it was clear that I was pushing my body and stronger than most “normal” participants of both sexes. To the point where when we were given exercises it wasn’t out of the ordinary to hear, watch how Patrycia does it, or Patrycia show them how it’s done. One memory that stands out so clear in my mind is one 6 am session we did a plank challenge. In this group there was one guy who was always the best, he was in incredible shape. Him and I battled in that challenge for over 6 minutes before they told us both that was enough. Another memory is on the hottest days, the days where I was supposed to be my weakest and most vulnerable, I absolutely rocked it the same day other “normal” people ended up in an ambulance from overheating.
I am not sharing these memories to shame anyone, and I am definitely not telling people living with MS to go out and push yourself to exhaustion. I am telling this story to give you an idea of how I got where I am. Almost since the beginning I have advocated for research about MS and exercise. The amazing thing is that people listened and really were already on it. There is now research that shows exercise promotes repair of MS lessions, now we still have a ways to go in determining what kind of exercise, how much exercise? But just like MS, I think it’s different for everyone. I think the vital thing is to learn to listen to your body. I choose to push my body to be strong, especially on some of the days that I am feeling my weakest. But I also have learned to listen to my body when not to push, when I need a break. Exercise is not a cure, but it does help me manage, and on the tough days there is no greater motivator for me than that.
When I am on my bike, I always joke that part of my brain is on repeat saying don’t crash or don’t die, but the other part especially when I am tired is just grateful. When I am running part of me is worried I will trip when I can’t feel my feet but the other part is just looking around loving that I am still able to run. It’s not about being fast, it’s not about being the best, it is about being thankful. It’s about trying to make sure I am strong enough to recover from a relapse, and it’s about managing my mental health. Exercise makes me feel like I am doing something to fight back against MS, and that is where so much of my motivation comes from. Everyday I choose to move moves me forward and I think above all else, that is what makes me strong, mentally and physically. How I move may change over the years, but as long as I am moving forward that is all I can control.
Sweaty Selfie
